A Third Grade Angel

This video reminds me of a little girl in my son's class who helps him with social skills at school.  Every afternoon she comes down to my son's contained classroom to color with him, play with him, and even read to him.  He lights up at the sight of her but he has never told me about her....because he can't.  I do hear about her from his teacher and how wonderful she is and how much she looks forward to helping him in the afternoons.  I have wondered what her parents think of her helping my son out and if they have any idea of how special she is and how much this means to me.  Kids don't typically notice my son for how wonderful he is.  They just notice that he can't communicate with them and that he doesn't interact with the way they would expect.  They are tolerant of him but aren't sure how to interact.  But Katelyn is unique.  She's as a third grader who sees beyond the usual expectations kids have of each other and meets my son where he is and stays there with him.  This is an amazing ability for a young child since usually those who try to interact with my son soon give up.  I am grateful for any effort a child makes to talk to my son and understand the challenge of trying to interact with a child who won't look at you, won't talk to you, and has no idea of how to play with you.  But Katelyn is more persistent than that and though I have yet to meet her, I know she is an exceptional little girl and I'm so grateful for her for being in my son's life.
I visited my son's special education room on Valentine's Day and had lunch with my son and his friends who also spend most of their day there.  Its a small group of about 4 kids with their one on one aides and the special ed teacher.  They all had pizza, fruit, and cookies for dessert.  I was witnessing my son in his world that he can't tell me about.  One thing I love about my son is that he is himself no matter where he is and just because I was there he was still himself for his teachers.
As we ate pizza I chatted with the other teachers.  It was nice to hear about the cute things my son has been doing in class or with his peers.  One thing I noticed was how much of a conversation we could have as adults.  The other kids ate quietly while the adults talked.  All of these kids had severe language delays and the contrast to a typical scene with third graders screamed in my ears louder than their silence.  Such a different world and for a moment I was reminded of that.
My son's special ed teacher then turned the subject to Katelyn.  She showed me a Valentine's Day placemat she helped my son make.  It was a butterfly made out of hearts and glued onto a piece of paper that was laminated.  She said that she met her mom and she shared with her mom all that she was doing with my son.  Her mom mentioned that every time they are out shopping and she sees Toy Story stuff Katelyn thinks of my son and starts talking about him.  The Toy Story movies and characters are an obsession for my son right now.  That warmed my heart.  My son's teacher said as she shared more about what Katelyn is doing with my son it made her mom cry.  I guess she does know how special her little girl is.  I hope I get to meet her.  I'd especially like to meet her mom and just thank her for her little girl and what she is doing in my son's life.

When I think of the next generation of therapists and special education teachers I think of her and hope.     

Socially Alienated - Living off the social "grid"

I remember when my son was just a baby going to play groups with him and watching other mom's talk while their babies crawled around the room exploring toys and watching each other.  I resigned from my corporate job that I loved to be a stay at home mom and I was really missing that connection with other adults.  But at these playgroups, my son would always begin fussing and he would be so clingy that I couldn't do anything but sit and hold him.  It was difficult to have any conversation over his crying.  He was about 9 months old at the time and after several attempts at playgroups, I realized that it was easier to sit home where he was happy rather than try to have a conversation over his crying.  I didn't know that he had autism at the time but his consistent crying and fussing in social groups was a clear indication that he was different.

I gave up on those early play opportunities and chose to invite over one or two friends who had kids and kept these play times at my house where my son was the happiest.  It was here that I watched their kids learn to walk and then run even before my son knew how to crawl.  My two best friends both had boys within 3 months of my son's birth and while they discussed milestones and first words, I watched my little 13 month old struggle to do the things a six month old could do. 

Then it was time for pee-wee soccer and t-ball.  We passed on those opportunities as well.  For a child who has severe delays with gross motor skills and cannot communicate or interact these weren't activities that would even be possible for him.  So we'd hear from friends of how well their little ones did in those games.  It felt like they were pouring salt into our wounds.  Did they even know how much it hurt to not be able to go to these games on Saturday mornings with everyone else?

It came to the point where my friend's kids abilities exceeded my son's abilities.  There was little we could do all together and whatever we tried to do we'd be alone in the far corner of wherever we were so my son wouldn't stress out.  Over time I saw my friends less and less.  I don't blame them but it is just something that happened.  We'd get together when we could but we were so restricted in how we could get together that the opportunities didn't come up as often.  They were meeting and hanging around with the parents of the kids that were at the playgroups and at t-ball.  Their kids played together and did sports together and suddenly they were getting together for more play dates and birthday parties and Sunday BBQ's.  We were left behind and I knew that from hearing them talk about their weekend in casual conversations.  We'd also see pictures of their fun and "normalcy" through emails and Facebook that we wished we could be a part of.  


We'd try visiting playgrounds to meet new people and kids.  This didn't work either because my son wasn't comfortable climbing on the equipment and with his balance and coordination it was just dangerous.  I'd try to force him to climb a ladder to go down a slide but all he'd do was cry at my effort to make him have fun.  And if there were a lot of kids on the playground he'd run as far from them as possible.  He'd prefer to be circling the fence that surrounded the playground which was always far away from everyone else.  So while other parents stood watching their little ones play on swings, monkey bars, and slides, I followed behind my son as he circled the perimeter.

There was one time at the playground where a kid was wearing a shirt with the number 10 on it and my son actually went up to him and pointed to his shirt and yelled "TEN".  The boy wasn't sure how to respond to that so he looked at my son, looked at me and continued to play.  My son was obsessed with numbers at the time and continued to follow him...up the stairs and down the slide while constantly trying to get another glimpse of the number 10 on his shirt.  I was so happy...he was using the equipment!  It totally freaked the kid out and he went crying to his mother but if only he knew that was the first time he actually noticed another child on the playground.  I was so proud of my son and wished all the kids on the playground wore a number.

There were BBQ's and birthday parties we were invited to but it increasingly became more difficult to attend these.  We were the ones furthest away from the activities trying to keep our son from either bolting outside or away.  We'd try to keep him with the group but he'd fuss and pull away as if we were torturing him.  I guess we were by forcing him to be with people.  Anytime we went to a social event, he wanted nothing to do with it and would escape and try to wander away.  Both my husband and I would have to take turns watching him.  He couldn't be left alone for a second since he was (and still is) so tactile and would get into everything.  At other people's houses we couldn't let him drop their breakables or tear through their drawers or cabinets.  Whoever had the duty of keeping him safe would end the evening completely stressed and exhausted.  We learned quickly which homes were somewhat safe for him to visit and which ones we completely avoided.  We also decided to never go to any outdoor event again after almost losing him.  I thought my husband was watching him while he was thought I was watching him and that's how we almost lost him.  It was a friend who noticed him running into the woods.

So our possibilities for socializing became very narrow.  We had a lot of requirements.  "Is it an outdoor event and if so will it be fenced in?  Does your home have baby gates and childlocks?  Do you keep breakables and houseplants around the house?  Are all your electrical outlets covered because he likes to obsess on plugging things in and out of them.  Is it okay if he puts all your kid's toys in his mouth because he doesn't know what else to do with them.  Do you mind if he stuffs everything he can find into your DVD player while obsessively turning it on and off?  Because if all that is okay then we will be able to actually come and perhaps socialize.  Otherwise you'll just see us chasing our son around so he doesn't get into anything or break it.  Oh, well never mind, its too tiring and stressful to chase him at your house so we'll just stay home at ours so we can relax."

And then there is school.  Our son was in a contained classroom with other peers who also have disabilities.  I was eager to meet these parents and form relationships with them because of course I'd have so much in common with them.  Well in the special needs world there isn't open houses, school plays, or anything like that.  There is HIPAA.  HIPAA is what prevents teachers from telling you the names of the kids your child hangs out with all day in school.  What I got instead were daily notes for my non-verbal child on how his day went and what he did with his "friends".  I'd get notes like "He was so cute today.  He gave his friend a hug." or "Today he said hi for the first time to his friend." It was a long time before I figured out which specific "friend" I kept reading about that he really liked.  This "friend" held his hand while they did circle time together.  This "friend" and my son always liked to sit beside each other at snack time.  And this "friend" always gave my son a hug when he was having a bad day.  I finally figured it out when I forgot one day to pack my son's snack and when I entered the school I saw the cutest little boy with down's syndrome sitting beside him doing arts and crafts.  His eyes were on my son trying to get his attention and when he looked up at him he would light up with a smile.  And then I noticed that my son smiled back!  A real connection!

So I learned to be more aggressive in learning who these kids are.  Other parents get to find out who their kids are hanging around by listening to them tell what happened in school.  Their kids can SAY the names of their peers who they like best and who they don't get along with.  I have no idea if a kid is behaving in ways that I wouldn't want my son to be exposed to because he can't tell me.  At least with a verbal child they can tell you.  So I learned to linger in the parking lot of my son's preschool and wait until other parents arrived to drop off their kids.  I'd walk him in at the same time they walked their kids in and left when they left.  I'd begin with talk about the weather and soon we talked about our kids.  The next thing I knew we were getting together for play dates.

When my son entered kindergarten things changed and more isolation set in.  He now rode the school bus to school and I wasn't able to meet parents as easily.  So what I had to do was have a birthday party to have these kids (and their parents) over to my house.  I want to know what these parents are like and what their kids are like.  So I asked my son's teacher if I could send blank birthday party invitations to his classmates.  She got the parent's permission first and then I sent in invitations with our information.  She filled in their names and sen them home.  She said 10 invitations would be enough to cover all the kids.  We got 10 RSVP'S!!!

It worked and they all came!  And the best part was meeting these other parents with the same social challenges that we had.  We talked while our kids ran around safely in our fenced in back yard.  We had gluten free and casein free food and cake for all the kids.  And no one passed judgement when a few kids needed their diapers changed.  There was handflapping, repetitive phrases, and even personal space being invaded.  While my son went to the furthest corner of our yard to escape another child joined him to do the same.  HIPAA didn't win this time.  Its rare moments like these where being in the presence of other families with kids who have special needs that makes you sometimes like "living off the social grid".  There are no rules, disapproving facial gestures, and best of all there is freedom.


Those of us raising children with special needs are often feeling alienated by our children's disability.  If our kids can't handle the stress of navigating a social environment, we are forced alienate ourselves from many of these opportunities.  We are also alienated by our friends when our kid's disabilities get in the way of being able to socialize.  And lastly, we are alienated by the system which tries to protect the privacy of our children and their disabilities.

We live off the social grid of society.  We struggle to stay connected.  We work harder to get there but when we do we are stronger.

Today's gift from my son.

My days are measured by those special times when I connect with my little boy and for an instant the world and all its distractions go away.  I am his world in that moment and it feels as if our hearts are beating as one, our breaths are parallel, and our eyes embrace.  This morning I had that moment and I just can't get enough of them.

Eye contact is rare and when I do receive it, I am thankful.  It was this morning while waiting for the bus his eyes met mine and he said "Mrs. Nesbitt?".
"Yes, Sweetie, Mrs. Nesbitt is at your old school." We had moved two years ago when he was in first grade to where we are now.  He then looked up and away and I could tell he was thinking.  He looked back at me.
"Rachel?"
"Yup, she's there too." His one on one aide that called by her first name.
"Mrs. Hutchins?"
"Yes Sweetie, she's there too."
It was a simple dialogue with my precious boy that I was told would never happen.  It was him opening up his mind to show me that he does remember things, people and places but he cannot formulate the words to tell me.  But naming his three teachers who all worked with him at a particular school two years ago gave me a glimpse into his world I know so little about.  "What is in there?" I want to ask.  "Please share with me, let me in."  And then the moment was gone when his eyes turned away.
"Fourty-four....eight...bus eight....1943" Back to repeating numbers...I've lost him.
Thank you Sweetie for sharing with me your memories.  I love you so much.

Just Add Sarcasm for Instant Stress Relief

Yes, so...how many times a year do you have to prove to varying agencies that your child is still autistic?  I've counted at least 6 and all these agencies all report to the state in one way or another.  And with my state's budget crisis, why can't they streamline this process?
Anyhow...our son qualifies for the Katie Beckett waiver so we can be eligible for Medicaid for his therapies.  We first got the waiver when he turned two and since then, we have to prove every year that he's still disabled.  This is fine. I get it. There are children who's symptoms improve and there is no need to provide services any longer.  But for me I am just so overwhelmed with the IEP's, progress notes, respite paperwork, in home support meetings yearly and quarterly, requests twice a year for income statements, evaluations, and everything else to keep his services rolling.  So this year I had a little bit of fun with the state with the help of his developmental pediatrician.

Yearly we usually do a phone interview to qualify for Katie Beckett.  This is usually about 20 minutes spent answering questions about what my son can't do.  But this year we had to do the face to face interview since it had been three years.  Every year I am asked to send them copies of the IEP (Yes all 80 pages of it), all quarterly updates for the last year, and my favorite...a doctor's note stating his diagnosis and that therapies are needed because of the diagnosis.  I would think they would catch on and realize that if a school is going to budget special services, hire a one-on-one aide, and write an 80 page IEP for your child, then we are certainly not faking his disability just for Katie Beckett.  Or wouldn't a doctor's note be just fine too?  And do they even read through the 80 page IEP?  I have wondered.
The week before the face to face interview we met with my son's developmental pediatrician.  At the end of the appointment I had asked her for this doctor's note.
"So what is this note for?"
"Its for the Katie Beckett waiver."
"Oh, usually these are written by the primary care doctors."
"Ya I know but since we are here..."
"No, that's fine...I can write it.  What do you need me to say?"
Sigh, "Oh that he's STILL autistic and therefore he STILL needs therapy.  The state still doesn't realize that autism is a lifelong disability so I have to keep proving to them that he still needs services."
She smiled "Oh I know." and nodded with approval.  She gets it.
She turned to her prescription pad and began writing, handed me the script, and I folded it and tucked it into my purse.  I thanked her and we had some friendly small talk and then my son and I left. 

The following week was our dreaded face to face interview.  My stress level was going through the roof! Were they going to put us in a highly inappropriate room again full of computers, printers, and cords for my son to play with and get frustrated with me because I couldn't keep his hands off it?  Or were they going to implement my nasty feedback from that experience and put us in a child-friendly room with outlet covers and toys?  Was the interviewer going to congratulate me on qualifying for Katie Beckett after asking all those horrible questions about what my son can't do.  (I did tell them right after to never congratulate a parent on qualifying for Katie Beckett.  Congratulations is when they don't qualify any longer.)  Such bad history with me and the state.

So with all my paperwork in one hand and the other barely on my already overstimulated son, we walked into a crowded waiting area.  Thankfully our interview was immediately after I walked in.  But on an occasion like this any parent of an autistic child wouldn't mind their child displaying their worst behavior since this was to prove that I do have a child AND he has a disability.  That's all the face to face interview is for.  Phone interviews don't allow them to see your child so every three years you need to prove his existence because the IEP and doctor's notes aren't enough.

We walk into a small office and immediately I see the interviewer take a seat behind a desk that has a computer, printer, a can with lots of pens, a box of paperclips, picture frames, candy dish, and a vase of flowers.  On the wall behind me was a digital thermostat.  If we left with only a broken keyboard, numbers 13-19 written on every wall, and the thermostat programmed at 92, we'd be doing alright. I'm not one to notice the details of a room immediately upon entering but with my son I see everything he's going to touch.
"Umm, this room is not appropriate for my son.  He's going to be after everything in here." I state as I'm holding his hand while he lunges toward the computer keyboard.  He's now at the end of my arm jumping and pulling to get away and "play" with all the fun stuff.
"Well this is the only office that was available.  Don't worry we'll be quick.  And I'm not concerned if he breaks anything...I understand."
"Okaaay."  So I let go of his hand and he swings the keyboard away from her and begins tapping the letter a over and over "A.A.A.A.A.".  That amused him for less than a minute and he began pawing at everything else on the desk.  He had his hands on everything even before we got to the first question.  And by the time I had answered the third he was bored with the desk and had already climbed a chair to start pushing buttons on the thermostat.  I just followed behind him trying to return things to order while answering questions.  By the time he had crawled under the desk and began trying to unplug and plug back in the printer, the interviewer stopped the questions and said "I do see the challenge here and seeing his behavior I can easily answer the rest of the questions for you.  Don't worry, you qualify for Katie Beckett...just leave the paperwork we requested right here and I'll do the rest for you."
Wow, did I really hear that?  I was relieved since I was already exhausted from chasing my son in that little room.  I handed her the paperwork and she quickly flipped through it.
"Do you have the doctor's note?  It's the only thing I don't see."
"Umm....oh yes its in my purse."  I had forgotten to take it out since the doctor had handed it to me.  I didn't even take a look at it.  I reached in my purse and handed it to her quickly so I could hold back my son from more destruction.
She unfolded it and read the script.  She then looked at me over the top of her glasses and said "I sense sarcasm here."
I looked at her puzzled.
"Well the note says '(My son's name) is STILL autistic and STILL needs services?"
I started laughing.  I couldn't help it.  His developmental pediatrician wrote the script out exactly how I asked for it!
The interviewer got defensive at that point. "Yes I KNOW there is no cure for autism.  But why these doctors have to insult us...."

Score:  State 0....Jen 1  Thank you to my son's developmental ped!!!!  That felt awesome!

Why didn't I get anything done Saturday

Husband left to see a hockey game that was 2 hours away.  Me and two kids home alone on a day of a snowstorm.  Worse than that my son was going through a huge regression.  Enough said?  Well here's more.

• My son had 2 pee accidents that left puddles on the floor and four, yes FOUR poop accidents.  All in underwear because he's supposedly potty trained (I hate regression!).
• My two year old had a pee accident (she hasn't had one in months)
• Laundry three times.  I really should have waited until the day ended to just do all those accidents together!
• My son decided to dump chocolate milk all over table and draw in it.
• Then he ripped off all the pictures on the fridge and threw the magnets everywhere.
• I really needed a break so I let him take a shower only to find that he had gotten out, grabbed the liquid hand soap from the sink and dumped it everywhere.
• In between the messes and accidents he was making, he surfed the kitchen getting into cabinets, fridge, pantry trying to haul anything and everything out.  
• For my sanity in the afternoon, we took a ride in the snowstorm.  (Rides are the only way he will sit for more than 2 minutes..so worth the risk of driving slippery roads!)

So that is why I didn't get anything done Saturday. 

Its a Chain Link Paradise!

Yes, I began this blog in 2006, wrote one post, and left it until now.  Why?  I don't know.  Too painful, too busy, too little inspiration?

So now I'm back and felt like I needed an update on the blog.  When looking at options for the layout and background, I came across the picture of chain link and knew that would be perfect.  Why?  Well if you have a wanderer like my son you would know exactly. I have a child with severe autism who cannot be left alone for more than a minute.  He will either bolt out of the house, get into things that can harm him, or break something as well.  He's nine now and I still cannot take a shower when he is home.

We moved to our current home two years ago now and for the first summer I was stuck inside the house with two kids while my husband was off to work.  I couldn't go outside with a fast 7 year old and a toddler.  It just didn't work.  They both would run in opposite directions and I couldn't keep them together.  Unfortunately with my son's autism, he doesn't engage in any extended length of play.  Toys interest him for less than 2 minutes because he doesn't know how to play with them.  He prefers to do what he knows how to do and that is holding his favorite toys and wandering around.  He doesn't stop walking ever and sitting seems to be very uncomfortable for him.   We've yet to unlock the secrets as to how to settle him down.  I have envied those parents with the luxury of having an autistic child who plays video games or is on the computer all day.

So after a summer of watching our neighbors through our windows enjoying the outside while I endlessly chased my son around the house trying to keep him out of stuff, I told my husband that we either get the fence or I will lose my sanity.  So all last winter we saved up and as soon as the ground was thawed enough we installed a black chain link fence around our back yard.  It turned out awesome!

We bought a huge pirate ship swing set and built a sandbox.  My husband and I put out our patio set that we barely used since we never could sit down outside with our son.  We locked the gates so he couldn't get out and removed anything that would cause him harm.  It turned out beautiful.  The dangers of the world were fenced out and we were safe within.  We had finally created a space for our family with our needs in mind and we could enjoy the outside without losing sight of our precious boy.

Unlike other families, we cannot just go to the beach or the playground.  We have a child that has no awareness of danger and we have to protect him.  And many times he doesn't enjoy going to public places because its stressful for him especially if there's a lot of people and kids.  When you take a child to a playground who doesn't have the strength, social skills, motor skills, or planning to play on the equipment what do they do?  They wander.  For years we tried to go to public parks only to end up running behind our son while he hurried off to nowhere.  This works for us.  We no longer have to chase him and he has the freedom of wandering within the safety of our chain link paradise.

Journey to acceptance. Am I even on the right road?

It has been over two years since our son was diagnosed and it has changed our world! I have gone through so many emotions and its an journey I didn't expect.

My first reaction to his diagnosis was to learn everything I could because in doing so, I thought I could fix him. I read everything I could on autism through books and on the internet for hours at night. I was trying to find my son in those books. If I could find him then I would have the instructions on how to fix things so he wouldn't struggle. I never found him...and I was exhausted trying.
Then I began to reason with autism. I enrolled him in all the therapies I could that I thought would help and fought for more that the state wasn't allowing him to have. I met at least every month with all the therapists and played a big role in creating his goals. I thought I won and expected my reward - that he would be caught up to his peers by the time he went to school. As he began his third year in his ABA program, I realized that may not happen. I thought I was playing by the rules when all along there were no rules.
I burned out quickly. And for six months I didn't meet with therapists, I didn't read about autism, and I didn't even speak about it. Every time my family or in-laws asked about his progress, I became irritable and didn't want to discuss it. I stopped doing anything that had to do with therapy with my son at home. I just wanted to be his mom but even that was getting difficult. I was depressed.
Throughout this whole time I was conscious of my stages of grief and I labeled them accordingly as I remembered them from my college psychology class. Intellectually I knew I had to go through the stages and I wanted to control my time in each because I looked forward to just accepting this. But my heart held me back and dragged me through the mud of misery. My heart could only go at its own slow pace.
It is going on three years of this and most days I am fine with juggling the therapies, a job, motherhood, and being a wife. I do the best I can and I am learning to accept that because during all this time I am trying to cope, my beautiful son is growing, maturing, and doing amazing things ... and I don't want to miss any of it.
He has taught me much more than I've learned from books and the internet on Autism. He is teaching me to slow down and enjoy today. Autism takes us down a path that we don't know the destination of and we are frightened. I'm on a trip I don't know how to pack for, I don't know what the destination will be, and I don't know the directions. How can one who likes to be prepared plan for that?